Exertional exhaustion is the critical aspect that distinguishes myalgic encephalomyelitis/CFS from other nociceptive, interoceptive, and fatiguing illnesses.

The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production.

The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.

The chronic but fluctuating disabilities require substantial lifestyle changes to plan each day's activities carefully, conserve energy resources for the most important tasks, schedule rest periods to avoid individuals overtaxing themselves, and to improve the quality of sleep.

Medications are not curative. Pharmacotherapy is indicated to treat pain, migraine, sleep disturbance, and comorbid conditions such as irritable bowel syndrome, anxiety, or depression.

Multidisciplinary rehabilitation treatment is more effective at reducing long-term fatigue severity than CBT in patients with CFS. [212] Body awareness therapy, coached by a physiotherapist, aims to establish an increased awareness and consciousness of healthy bodily symptoms and their relation to physical function, psychological wellbeing, and social interaction.

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They also refer to CBT as a second treatment, but do not mention the 'illness challenging' CBT, just classical coping, and then go on to mention PACE.

On individual treatments

Non-adherence with recommended low-impact exercises is a common problem and may indicate that the intensity of the exercise is too great for the patient to tolerate. Provide sufficient time between treatments for complete recovery. If pain or post-exertional malaise (PEM) occurs, decrease the intensity of the exercise.

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and

Patients with severe CFS may be bed-ridden and require home visits and in-home therapy sessions because severe pain and discomfort will prevent them from travelling. Severe CFS represents about 5% to 10% of cases.

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(a reference for the % severe is not given).

They then go on to mention exercise as a therapy, again predicated that it's an aerobic problem.

They in the aetiology section mention rituximab, and various bio causes.

The diagnostic section emphasises PEM.
PEM is defined as

Minor levels of physical and/or mental exertion are poorly tolerated. Low levels of physical or cognitive activity or emotional stressors lead to exacerbations of fatigue, pain, and cognitive dysfunction. Such exacerbations may have immediate onset or be delayed by several hours, and they may persist for hours, overnight, or several days despite rest and reduced activity. Exertional exhaustion is the characteristic finding in CFS.

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They do mention 'psych' treatments under 'emerging treatments' - but it's below rituximab, and several other therapies.

They mention that studies using oxford drag in lots of just fatigued.

Perhaps the most problematic part is

Patient instructions
Patients should be educated on how secondary physical deconditioning can emerge due to increased resting and activity restriction. Difficulties and fears associated with attempting to increase levels of physical activity should be normalised. Patients are instructed in establishing and maintaining a daily low-impact physical activity routine (e.g., walking, stationary biking, stretching, and swimming). Graded exercise programmes should be structured and monitored to prevent cycles of over-exertion and prolonged inactivity. A referral to a specialist in cognitive behavioural therapy (CBT) may also be recommended. Patients should be routinely monitored for depression and encouraged to engage with personally meaningful activities and social supports. Where indicated, patients should be assisted in accessing appropriate mental health care.

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I note that Peter White is listed as a peer reviewer.

In general, the document is less wholly positive on CBT and GET than might be expected.
There are possibly useful parts.
It does seem to be under general review, with the most recent being last month.
It does not seem to mention at all any of the recent critical papers of CBT or GET.

This won't reverse deconditioning - high intensity/impact activity is needed to do that (and is not possible when you have ME or CFS). Maybe they should have had an exercise physiologist as a peer reviewer...

I am not familiar with what went before but there seems to be a shift of emphasis here?

Perhaps there is some recognition that CBT and GET are not a panacea, but they seem to be replaced by a fuzzier version of the same approach. I guess this statement sums up the problem;

The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.

No, the primary goal of management is to help the patient get better. That might mean providing a 'supportive healthcare environment' but an intensive care unit or a biologic infusion centre does that too so this actually means nothing of itself. And then there is the assumption that the way to do it is a 'multidisciplinary team' when there is as little evidence for that being any use as there is for CBT or GET. How are these therapists going to 'manage symptoms' or improve functional capacity?

As far as I can see this sentence would better be replaced by something based on a comment made by a parent of a young person with ME/CFS:

'Nobody has any idea what the best thing to do is but if you are lucky you may find someone like this guy Chris who was really helpful. You may get asked to join one of these therapy trials but they seem to be a waste of time.'

There seems to have been an attempt to avoid being prescriptive but then the old 'should' word comes in.
'Patients should be educated... Patients are instructed...
Why? When nobody knows what is best.

I do not seem to be able to access this through UCL, which is almost unique. It seems I could access it through the hospital if I was still a member of staff. So BMJ Best Practice does to seem to be a academic journal, just a clinicians practice manual.

This seems almost revolutionary: "The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production."

The rest seems quite "evidence based" in the pejorative sense. A sausage of all the evidence, no matter how rotten and unreliable.

To their credit, there is a clear acknowledgement of PEM.

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There is a slight change of emphasis and scientific acknowledgement because there has to be - there is too much evidence stacking up to the contrary to maintain the psychological world view that has pertained since the 1980s: it is however not significant enough to alter the " treatment" parameters- thus is simply being respun with a slight shift of emphasis. There is too much investment in the infrastructure of its delivery ( hence also the psychological framing of many other illnesses currently going on ) for constructs to be completely reframed.

This seems almost revolutionary: "The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production." There is also a clear acknowledgement of PEM.

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I am suspicious that this is just a sop to allow in the physiotherapists. If there is evidence for a muscle problem then physios can be brought in 'scientifically'. The emphasis is on lack of energy. But to me that is not the real problem. The problem is that exertion causes PWME to feel ill. If mitochondria are really important I think they must be important in the brain, or as Mike Murphy suggested, as signalling systems, and physiotherapy is not going to help those.

I am suspicious that this is just a sop to allow in the physiotherapists. If there is evidence for a muscle problem then physios can be brought in 'scientifically'. The emphasis is on lack of energy. But to me that is not the real problem. The problem is that exertion causes PWME to feel ill. If mitochondria are really important I think they must be important in the brain, or as Mike Murphy suggested, as signalling systems, and physiotherapy is not going to help those.

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Sadly this makes sense.

The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.

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Evidence that any exercise regimen can objectively improve functional capacity seems to not exist. CPET studies found that exercise worsens functional capacity for a while. Is it possible that there might exist some form of exercise therapy for a subgroup of patients that makes a clinically significant difference? Maybe, but it's up to the exercise therapy proponents to prove it. At the moment this idea seems to be wishful thinking.

Whoever did this is clearly seeing that the wind is shifting. This seems like just a minor revision to some guidance but it looks potentially positive The question is are they moving with the times in a neutral way without an agenda or are they actively using "weasel words" in line with an agenda of maintaining the BPS status quo

I am suspicious that this is just a sop to allow in the physiotherapists. If there is evidence for a muscle problem then physios can be brought in 'scientifically'. The emphasis is on lack of energy. But to me that is not the real problem. The problem is that exertion causes PWME to feel ill. If mitochondria are really important I think they must be important in the brain, or as Mike Murphy suggested, as signalling systems, and physiotherapy is not going to help those.

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I share some of that suspicion but I suppose, grasping at straws, it still compares favourably to the recent NICE piece that stuck to the discredited 'likely to be due to emotional issues'. If GPs start receiving information that this is a physical disorder rather than malingering that would still be progress (which shows just how bad things are).

I haven't read this years. I did the trial and read previous ones. Then it was quite bizarre because all the background stuff, the first pages, were quite good and reflected the latest science etc and treated as a physical illness. What was bizarre was the treatmemt section was basically .... but all that can be helped with CBT & exercise ...... which from a patient perspective didn't make sense.

I hope they have modified it further and I'm glad they are presenting the latest science but I guess as long as PACE reigns these type of therapies will still be pushed? If anyone can put a file of what it in full says this year that'd be great.

Are they still classifying it as rheumatic? I think that's where they moved it from psychiatric.

Is there perhaps a disconnect between physical clinicians/real scientists/GPs etc on the one side and the psych crowd/actual front line therapists on the other sides?

Such that the former group really don't realise that the latter actually believe it's all in the head/we'll cure you with positive thoughts?

Eg the first totally buy into the CBT/GET as an adjunctive or supporting treatment, but aren't fully aware that the psych crowd will then tell the patient it's all their own fault etc etc?

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My experience of seeing a NHS Neurologist at a London hospital and then being seen at the hospital for Neurology (Queen Sq) was that they knew exactly that they were doing.

The patient would be lulled into a sense of false security with lip service being paid into ME being a physical disease, but their intention was to send the patient off to someone who would treat it as a psych one.

Being seen at a NHS "CFS" clinic can be a little different. There's mixed beliefs and intentions there. Some clinicians give the impression that they believe ME is a physical disease but say they are "forced" by the NICE guideline to offer CBT and GE. Then the CBT or Physio will give the impression either implied or overt that these can cure or improve the patients symptoms.

I'd say from my own experience that there are plenty of UK doctors of all types, who should know better, who genuinely believe that CBT and GE are curative.

I've had frank discussions with clinicians at UK hospitals over decades and come across these beliefs. They have been taught in medical schools that ME and other conditions are psychological.

Not great, but it could make communication with a GP better. My GP is willing to admit he doesn't know and treats me symptomatically but he is worryingly near retirement age. This document comforts me that I could have an armed truce with a new doctor instead of an all out war!

There is a place in ME for physio but it has to be so gentle it is almost invisible. I have tried over the years to keep full movement of all my joints following advice given to my Mother in Law who had RA. I do it by simply using different arms to reach for things, that sort of level of "exercise". I have also improved my walking by doing a few extra steps round the house every day. I lose it when I have a bad relapse but, luckily, I have managed to get it back every time, not that I have ever achieved going out! It makes life easier if I can get to a window to open or close it for instance.

If physios can get their heads round that level of "exercise" and how important it is to pace then new patients would get useful information so that they might even recover.

The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production." There is also a clear acknowledgement of PEM.

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At this point they can't really say anything else. But I suspect it is meaningless.

Physical or not the treatment is all the same and will continue so for as long as they can get away with it. So really nothing has changed. It would seem they are quite prepared to live with the disconnect between the reality and their own interests. The goal remains-- make psychiatry legitimate by validating it with neurology. The only question left to answer might be ; is there a level to which they will not stoop in achieving that goal?

ETA: I have no problem with a scientific approach to understanding psychiatric issues. Which is what neurology should represent. Instead, because neurology is rather new and uncertain it is sadly being hijacked and abused to a political end.

The best thing that could happen is that neurology develops into a more mature science that uses technologies that produce validated evidence leading to appropriate treatments based on sound evidence.